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After the first national Williams Syndrome Day on Friday last week, a Witley couple wants to raise awareness of the condition and the real reason behind their daughter’s smile.

Grace-Louise Crook, who is 13 months old, was diagnosed with Williams Syndrome in October after being plagued with unexplained health issues.

The condition affects one in 10,000 people and is characterised by medical problems such as cardiovascular disease and developmental delays.

Sufferers also tend to have highly social personalities and striking verbal abilities, and it is their ‘overly friendly’ nature that the awareness day focused on and asked the public to ‘#sayhello’.

Amy Carpenter, 27, said many people often feel awkward around people with the disorder as they are not used to people who are so inquisitive and friendly.

“On the very first ever UK awareness day we joined other families to #sayhello to Williams Syndrome as it’s not our children who are too friendly but the world that maybe is not friendly enough.

“When we found out about it, we didn’t know anything and even the doctor who spoke to us was referencing the Williams Syndrome Foundation website, it is that rare.

“She was diagnosed with moderate hearing loss soon after birth and I was devastated as I thought it was my fault. Then other things started to go wrong and all we wanted was answers.

“When I told my parents, the phrase that I used was ‘its life-changing not life-limiting’ and that has stuck with me every time I have had to tell someone about Grace.”

Gracie, who is 1, has Williams Syndrome

Miss Carpenter and her partner, David Crook, do not believe there are any other sufferers in west Surrey but they have been using the Williams Syndrome Association to network and seek advice from other parents.

“We now have this huge network of people around us,” she said. “About a week or two after Grace’s diagnosis, my mum and I joined the foundation – they were amazing.

“Natalie, who is our area support, called me the day after we joined to introduce herself and tell us that we could ring, email or text her if there was anything we wanted to talk about.

“We got packs through from WSF with books and leaflets on Williams Syndrome and passwords, etc, for the website. The charity is run for parents by parents and they have been fantastic support to me and my family.”

In March, the family held a fundraising event called ‘A Night with Elvis’ and raised more than £3,000.

“We just want to continue to raise awareness of this disorder and raise money to help other children like Grace but also parents who, like us, knew very little,” said Miss Carpenter.

“There will be a race night at Fosters Club in Witley on Saturday June 13 and some of us are hoping to enter the Great South Run in October.”